Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care.

Background: Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. Objectives: To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Design and methods: Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. Results: Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Conclusions: Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. Limitations: COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Future work: Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. Trial registration: This trial is registered as Current Controlled Trials ISRCTN98646409. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.

Local councils need to find new ways of using people's experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. 'Experience-based co-design' is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.